Transcription

1 Cerebral Palsy CRITICAL ELEMENTS OF CARE Produced by The Center for Children with Special Needs Seattle Children s Hospital, Seattle, WA Fifth Edition, Revised 6/2011

2 The Critical Elements of Care (CEC) considers care issues throughout the life span of the child. The intent of this document is to educate and support those caring for children with cerebral palsy. The CEC is intended to assist the primary care provider in the recognition of symptoms, diagnosis and care management related to a specific diagnosis. It provides a framework for a consistent approach to management of these children. These guidelines were originally developed through a consensus process. The design team was multidisciplinary with state-wide representation involving primary and tertiary care providers, family members and a representative from a health plan. Subsequent revisions have utilized the best evidence based practice recommendations available at the time. Content reviewed and updated 6/11 by John (Jeff) McLaughlin, MD, and William Walker, MD. DISCLAIMER: Individual variations in the condition of the patient, status of patient and family, and the response to treatment, as well as other circumstances, mean that the optimal treatment outcome for some patients may be obtained from practices other than those recommended in this document. This consensus-based document is not intended to replace sound clinical judgment or individualized consultation with the responsible provider regarding patient care needs. 1997, 2002, 2006, 2011 Seattle Children s Hospital, Seattle, Washington. All rights reserved.

3 Table of Contents Cerebral Palsy CRITICAL ELEMENTS OF CARE I. INTRODUCTION TO CEREBRAL PALSY What Is Cerebral Palsy?...4 How Common Is Cerebral Palsy?...4 How Is Cerebral Palsy Diagnosed?...4 How Are the Patterns of Cerebral Palsy Described?...4 What Are the Causes of Injury in Cerebral Palsy?...5 Are There Associated Risks of Other Disabilities?...5 How Is the Severity of Cerebral Palsy Described?...5 Does the Presenting Picture of Cerebral Palsy Stay the Same?...5 How Can a Child with Cerebral Palsy Be Best Managed?...6 What Are Some Valuable Characteristics of Optimal Care?...6 When Are Interventions and Treatment Indicated?...6 Who Can Help in Monitoring the Need for Interventions or Treatments?...7 What Are Some of the Specific Management Issues that Can Occur?...7 Critical Elements of Care...9 II. GUIDELINES FOR CRITICAL ELEMENTS OF CARE...10 Age < 2 Years...11 Age 2-4 Years...13 Age 4-6 Years...15 Age 6-12 Years...17 Age > 12 Years...19 III. QUICK-CHECK WORKSHEET...21 IV. APPENDIX: REFERENCES AND RESOURCES Professional Reading List...22 Information and Organizations...23 Periodicals...24 Reading List for Families...24

4 I. INTRODUCTION TO CEREBRAL PALSY INTRODUCTION TO CEREBRAL PALSY Cerebral palsy is an excellent example of a medical condition that requires competent, comprehensive, continuous, compassionate and community-based care. It is critical that primary care providers (PCP) be involved and knowledgeable about the current and future care plan for the best outcome for each child. A team approach is required to develop this practice model. The team members may include community service providers such as public health departments, early intervention programs/schools or private therapy providers including occupational, physical and speech therapists. There is also a need for experienced teams of specialists based at regional centers who have experience in the treatment and management of individuals with cerebral palsy. The family is at the center of the care team. What Is Cerebral Palsy? Cerebral palsy is a group of disorders of movement and posture resulting from injury or malformation to the developing central nervous system. There are many causes for cerebral palsy, with onset ranging from preconception to an arbitrary point such as 24 months of age. The neurologic impairment is nonprogressive, although secondary disability can occur. Characteristics of cerebral palsy change with developmental stages, especially in the first few years of life. This impairment and resultant disability are both permanent. How Common Is Cerebral Palsy? Over the last 20 years the birth incidence of CP has been steady between 2 and 2.5 cases per 1,000 live births. Alarmingly, the most recent estimate of prevalence in children from the CDC is 3.6 per 1,000 in school age children. There is essentially no mortality due to CP except in children who cannot roll over or swallow on their own. This small group of children has a high mortality rate. Most children with CP have a long adult life span ahead so that care in childhood should take adult function and participation into account. How Is Cerebral Palsy Diagnosed? The diagnosis of cerebral palsy is essentially clinical and is highly dependent on the physician s knowledge of normal motor development and its variants. In all but the mildest cases, the diagnosis of cerebral palsy can be made by months of age. A thorough search for etiologies is warranted in the young child newly diagnosed with cerebral palsy. This includes a thorough history and physical, plus follow-up observation of the progression of motor abilities at frequent intervals. Physicians experienced with this disorder, such as developmental pediatricians, neurologists and geneticists, can be consulted to aid in the diagnosis. To aid in confirming the diagnosis and ruling out neoplastic or progressive causes for motor disability such as metabolic and neurodegenerative disorders, magnetic resonance imaging (MRI) is usually indicated. The imaging can usually wait until a child can undergo the study without sedation or done in conjunction with another procedure. Other diagnostic testing may include cultures, immune status, metabolic screening, karyotyping, genetic probes or confirmatory tests for other specific disorders. EEGs, EMGs and skull films are not useful for the diagnosis of cerebral palsy or its etiology. How Are the Patterns of Cerebral Palsy Described? Cerebral Palsy (CP) represents a group of disorders of variable etiology and variable clinical presentation. Efforts to characterize individuals with CP may occur for a variety of reasons: clinical description, prediction of future status, and to monitor changes in function. These methods incorporate information from several dimensions: 1. Topography of the Impairment: the parts of the body that are involved (quadriplegia, hemiplegia, diplegia) 2. Type of Impairment: is the body stiff (spastic most common), loose (hypotonic) or exhibiting abnormal motor control (athetoid, ataxic, dystonic) Critical Elements of Care: Cerebral Palsy 4

5 I. INTRODUCTION TO CEREBRAL PALSY 3. Severity of Mobility Limitations: the Gross Motor Function Classification System, which ranks severity on a five-point scale by age groups, is the best way to describe severity (see below) Studies have demonstrated that injuries to certain areas of the brain result in consistent patterns of impairment. This observation has led to the topographical descriptors of various spastic forms of cerebral palsy such as hemiplegia, diplegia or quadriplegia, which are thought to be the result of pyramidal tract injury. Certain patient populations are predisposed to a particular type of cerebral palsy, as in the case of premature infants and spastic diplegia. The extrapyramidal types of cerebral palsy (athetoid, dystonic, ataxic) will typically involve the entire body. Many children have a mixed clinical picture, where both spastic (pyramidal) and extrapyramidal features are present. What Are the Causes of Injury in Cerebral Palsy? The injury resulting in cerebral palsy may occur during the prenatal (including genetic), perinatal or postnatal periods. The majority of cases are prenatal. Many children with cerebral palsy appear to have a cascade of harmful events that often begin in utero and continue during and after delivery. The precise etiology often cannot be identified in 20-30% of cases. True perinatal asphyxia at or near term causes a small percentage of cerebral palsy cases. Are There Associated Risks of Other Disabilities? Yes, cerebral palsy is known to have a higher risk association with other disabilities. These risks include, but are not limited to: Seizures: 35-45% Intellectual disability: 40-60% Visual impairments: 20-60% Communication impairments, including hearing: 30% Feeding difficulties Behavioral concerns Sleep problems In children with cerebral palsy, multiple disabilities tend to be the rule rather than the exception; 80% will have at least one associated disability, while 40% will have three or more associated disabilities. Despite these multiple challenges, many children with CP can become healthy, productive adults. How Is the Severity of Cerebral Palsy Described? Traditional methods to classify the severity of CP have limited reliability and validity. Newer systems, including the Gross Motor Function Classification System (GMFCS) have been created and validated to consistently describe gross motor function among examiners. The Gross Motor Functional Classification System (GMFCS) defines five levels of motor function for each age group (see www. canchild.ca and look under Motor Growth Measures for GMFCS-ER). Both researchers and clinicians now use the GMFCS to compare groups of children with cerebral palsy and to describe individual children in medical records. Children who have GMFCS I or II severity are ambulatory. Children who have GMFCS III severity can transfer independently and walk with assistive devices for short distances. Children who have GMFCS IV or V severity require devices such as power mobility and the assistance of other people. The overall severity of a given child s impairment is often determined by the other disabilities that can accompany CP. Does the Presenting Picture of Cerebral Palsy Stay the Same? No, cerebral palsy exhibits an evolving clinical picture over time, secondary to the maturation of the central nervous system; therefore clinical change should be expected. Because of this time effect, predictions about prognosis are rarely absolute. The clinical evaluation of these children must be ongoing and outcomes should be carefully assessed and reassessed. A changing clinical picture may be the natural progression of the primary injury, modified by maturation of the central nervous system (i.e., increasing tone or spasticity), or it may be a new Critical Elements of Care: Cerebral Palsy 5

6 I. INTRODUCTION TO CEREBRAL PALSY finding identified by assessment methods that are age-dependent (delayed language or cognitive abilities). The clinical change may also be a result of the emergence and/or identification of other associated deficits. The evolving appearance of signs and symptoms of cerebral palsy, such as changes from hypotonia to spasticity, need to be distinguished from progressive disorders such as those caused by metabolic, neoplastic or degenerative disorders. How Can the Child with Cerebral Palsy Be Best Managed? The strategic goals in the management of cerebral palsy are to enable the child to grow up in the family and community and to achieve optimal independent participation in adult life. Comfort and ease of care are additional valued goals. Much of the tactical management of cerebral palsy is aimed at preventing cumulative secondary impairment and disability. Follow-up at regular intervals (directed at assessing motor and developmental progress) is essential in the optimal management of a child with cerebral palsy. The multi-faceted nature of cerebral palsy requires a comprehensive approach. No two cases with cerebral palsy are alike. Interventions directed at one aspect of the child s problem must be made while taking into account the potential impact they may have on all areas. Prioritization is crucial. A team of experienced professionals is usually needed at both the primary and consultative level. What Are Some Valuable Characteristics of Optimal Care? Effective health care systems for children should be family-centered, competent, comprehensive, compassionate, continuous, community-based and culturally appropriate. Family-centered care encompasses an understanding of the child s place in the family and the impact of the disability on all family members. The family is empowered to play a major role in decision-making for their child. Through meetings, educational materials and copies of all professional reports, families are provided the background necessary for making informed decisions. An effective health care system is a comprehensive source for the patient s routine, as well as, specialty care needs. A child s cerebral palsy does not prevent her from contracting ordinary childhood diseases, such as ear infections and influenza, nor exclude her from anticipatory care needs, such as immunizations and monitoring of physical growth. Continuity for these children and their families is essential. Following these children over time permits monitoring of the progression of their disability and reduces redundancy of evaluations. Continuity fosters an anticipation of medical, educational and community needs for the child and the family and the prevention of further complications through early identification and treatment. Competence requires that professionals have current training, experience, judgment and interest in cerebral palsy. No single provider has the time or expertise to address all of the affected functional areas and effectively manage these children while supporting their families. A community-based approach requires appropriate use of community resources in areas of special education, family support systems, financial support, respite, child care, recreation and social participation. A compassionate approach emphasizes the child, not the disability. Long-term stressors are anticipated and countered with appropriate care and support. Rules are adjusted to serve individual wants and needs. Self-defined choices for quality of life are respected. When Are Interventions and Treatments Indicated? Treatment for children with cerebral palsy should be centered around improved activity, participation and independence for the child and the family - now and into the future. Interventions and therapies should not be mandated based on the label of cerebral palsy. The effectiveness of any intervention is optimized by periodic review and modification with a constant goal of improving function. Neither the clinical presentation nor the clinical treatment should be expected to remain static. Anticipating Critical Elements of Care: Cerebral Palsy 6

7 I. INTRODUCTION TO CEREBRAL PALSY clinical changes allows for improved monitoring and planning for necessary interventions. Who Can Help in Monitoring the Need for Interventions or Treatments? Community and regional resources can assist the PCP and family in making decisions about services. Early intervention centers, schools and a local therapist can monitor the progression of the child s abilities. Experienced cerebral palsy teams will provide the PCP with extended assessment abilities and intervention programs needed to assist the child and family. What Are Some of the Specific Management Issues That Can Occur? Spasticity and Dystonia Symptoms such as spasticity and dystonia evolve over time and can become problematic. When this happens pharmacologic or surgical interventions are available. Community therapists can help monitor for these concerns. By developing a working relationship with these professionals, the PCP will be able to intercede appropriately. The PCP can use the cerebral palsy team to develop a plan of care for these problems. Pain Pain is a common problem in children with cerebral palsy at all ages. Many children are remarkably stoic so the provider needs to ask about pain. Pain is most often due to either musculoskeletal problems, spasm from spasticity or gastrointestinal issues such as reflux and constipation. It is important to search for and eliminate causes of pain and to treat pain vigorously. Muscle spasm due to fatigue or severe spasticity is common. Sleep Problems Sleep problems are common in children with cerebral palsy at all ages. The causes can be complex but can also be due to typical developmental issues. Parents may be more likely to respond to wakening in a child with a disability like cerebral palsy for many logical reasons but can also reinforce repeated wakening. Airway problems are common in young children with tonsillar hypertrophy and in older adolescents with acquired jaw deformities. Central and obstructive apnea may be present. Children with severe visiual impairment may not have a normal circadian clock. Musculoskeletal Changes Musculoskeletal changes are often the most easily identified consequences of central nervous system injury in cerebral palsy. Interventions may address the physical changes of contracture, muscle imbalance, joint instability and body malalignment with the goals of preventing deformity, improving function and relieving pain. Professionals participating in the care of these children should consider the impact any intervention will have on function. Everyone involved should encourage input from other professionals who are working with the children, therapists and parents. A thorough orthopedic assessment should include a detailed visual inspection (e.g. gait observation), a hands-on inspection of joint mobility (e.g. passive range of motion) and an assessment of joint alignment. Contractures are more likely in children with spasticity than others. There have been specific musculoskeletal problem areas identified in this patient population. Spasticity in the hip adductors may result in subluxation of the femoral head. Dislocations of the hips are more common in nonambulatory children when compared to ambulatory children. Subluxation can reach an advanced stage before becoming clinically apparent. The hip needs to be relocated in the socket by age 4-5 years to develop properly. There is ample evidence from prospective studies to support obtaining hip X-rays beginning between months as a standard of practice. The frequency of subsequent X-rays depends on hip status and severity of spasticity. Gonad shielding should be routine. Scoliosis is the appreciable deviation of the normally straight vertical line of the spine. Children with cerebral palsy are at risk for scoliosis, especially during times of rapid growth, such as the pubertal growth spurt. A simple lateral deviation of the spine is not a cause for concern. The presence of a twist or rotation around the vertical axis warrants x-rays and orthopedic consultation. In ambulatory children, the incidence of scoliosis is less than 10% and usually Critical Elements of Care: Cerebral Palsy 7

8 I. INTRODUCTION TO CEREBRAL PALSY appears during the pubertal growth spurt. There is a 30-40% incidence of scoliosis in non-ambulators. Their scoliosis is more likely to be lumbar and is often associated with pelvic obliquity. Management decisions in the treatment of scoliosis should consider the degree of curvature, the proximity to the age of skeletal maturity and the linear growth rate of the child. While there is no compelling evidence that physical therapy, custom seating, or any treatment for hypertonia can prevent the progression of scoliosis, all of these treatments have important roles in helping a child achieve and maintain function. The goals of orthopedic intervention for scoliosis should be: to maintain balance in both the sitting and walking positions; to reduce pain; to reduce areas of increased pressure resulting in decubitus; and to preserve cardiopulmonary functional reserve. It is important that surgical repair of scoliosis be undertaken by an orthopedist who has experience with individuals with cerebral palsy and in a center with strong postoperative and rehabilitation care teams. Therapy and Bracing Therapy and bracing concerns can be evaluated in the community by therapists, rehabilitation medicine physicians and orthopedists. Therapy is more effective when directed toward functional goals (such as getting up stairs, versus increased ankle dorsiflexion). The importance of strengthening, practice and maintenance of cardiopulmonary endurance deserves considerable emphasis beginning in the preschool years and continuing through adulthood for individuals with cerebral palsy. There is ample evidence that muscle strengthening is beneficial and does not worsen hypertonia. Referral to experienced cerebral palsy teams at regional centers is often helpful. Adaptive Equipment Adaptive equipment needs begin at an early age when the child s need for safety is addressed. The family may need equipment to bathe, transport or position their child in a safe manner. Community therapists, in association with early intervention centers/schools, can assist the PCP in determining how best to address these needs. If the child s needs are difficult to meet, it may be necessary to refer to an experienced cerebral palsy team for evaluations and recommendations. Seizures Seizures also require careful evaluation and followup in children with cerebral palsy. Overall, 35-45% of these children will have some kind of seizure disorder. The onset of seizures can occur at any time, but usually begins during the first two years of life. Seizures can be of any clinical type, though grand mal seizures are reported most frequently. There is a strong correlation between the clinical type of cerebral palsy and the incidence of seizures. There is a higher incidence of seizures in children with hemiplegic and quadraplegic (60%) cerebral palsy. Seizures are relatively uncommon in spastic diplegia (15-30%), and in the extrapyramidal forms (<25%). Cognitive Abilities Cognitive abilities should be specifically assessed and must be considered as a comprehensive treatment plan is developed. Overall, 40-60% of children with cerebral palsy will have an intelligence quotient below 70 within the range defined for intellectual disability. The severity and frequency of intellectual disability is related to the clinical type of cerebral palsy. More than 75% of children with hemiplegia, diplegia and athetoid cerebral palsy have normal intelligence, while 75% of children with spastic quadriplegia have intellectual disability. Children with cerebral palsy who have a normal intelligence quotient are often at risk for learning disabilities. It is known that a high percentage of the children with severe motor disabilities also have communication difficulties. There is a close linkage between communication skills and the outcome of cognitive testing. Therefore it is imperative that the impact of these deficits on the testing procedures and the child s communication and language skills optimized prior to the initiation of cognitive assessments. Visual Impairment Visual impairment is present in more than half of children with CP. Refractive errors (often severe) Critical Elements of Care: Cerebral Palsy 8

9 I. INTRODUCTION TO CEREBRAL PALSY and strabismus (esotropias > exotropias) are most common, but nystagmus, cortical visual impairment, visual field defects and complex disorders of visual control may all be encountered. Hearing Problems Hearing problems are estimated to be present in 10-15% of children with cerebral palsy. An accurate measure of hearing ability is essential. While universal newborn hearing screening is essential, children with CP may develop permanent hearing loss after the newborn period. Oral Motor Deficits Oral motor deficits (dysarthria) can adversely affect the individual s speech and feeding abilities. The child may have a central speech/language deficit such as aphasia or a central deficit in motor planning (apraxia). Feeding/Nutrition Careful monitoring of the weight and length/height are critical in determining the proper growth of the child. Good nutritional status is essential for healing following surgery. The risk for feeding and nutritional concerns in children with cerebral palsy, including osteopenia, increases with the degree and severity of the disability. Risk factors for vitamin D deficiency include lack of ambulation, anticonvulsant use, low sun exposure and living above 40 degrees latitude, poor calcium intake and general malnutrition. Providers should assure that all children with CP receive at least 400 international units per day of vitamin D to maximize bone density and should check 25-hydroxy vitamin D levels yearly. Special techniques are required to measure bone density accurately by DEXA scan. DEXA scans and bisphosphonate treatment are best reserved for children with CP who have a personal history of lowimpact fractures. At present, there are no data on the safety of bisphosphonates given in childhood and continued for a lifetime. Those with poor calcium intakes should be supplemented with calcium (500 to 1,300 mg/day, depending on weight). in nonambulatory children with CP. Constipation is common and should be treated vigorously with adequate fluids, stool softeners, bowel stimulants, comfortable adaptive toilet seats and other techniques. While gastrostomy/jejunostomy technology and special formulas make it easier to assure the nutritional well-being of children with severe CP, management issues including the need for other surgical interventions (fundoplication, etc.) may further complicate the decision-making process. Emotional Support Emotional support for the family is important. All family members are affected when one member has a disability. Family stress is intensified by the care needs of the child. The PCP can help the family find support through Washington State Parent to Parent or PAVE - Parents Are Vital in Education (see references). The local public health department, early intervention centers/schools and other agencies may help identify other resources to assist the family. If these services are not locally available, then referrals to an experienced cerebral palsy team may be of assistance. Critical Elements of Care The following outline defines functional areas that need to be assessed and the recommended frequency for assessment. It also provides the PCP with suggestions for appropriate consultations with other specialists, including developmental pediatricians, orthopedists, neurologists, physiatrists (rehabilitation specialists), speech therapists, physical and occupational therapists, nutritionists, psychologists, social workers, educators, public health nurses, equipment vendors and others. Along with these specialists, life-long care always involves the child s family and requires their thoughtful involvement in all decision making. These Critical Elements of Care constitute an initial attempt to provide a framework for long-term management of such children and should not be viewed as a comprehensive manual for care. Gastrointestinal Problems Gastrointestinal problems (gastroesophageal reflux, GI motility disorders and constipation) are common Critical Elements of Care: Cerebral Palsy 9

10 II. GUIDELINES FOR CRITICAL ELEMENTS OF CARE GUIDELINES FOR CRITICAL ELEMENTS OF CARE How To The Critical Elements of Care for Cerebral Palsy were designed to organize and simplify the child s care plan. They provide information and education regarding the comprehensive needs of an individual with cerebral palsy. The Critical Elements of Care are divided into five age groupings: < 2 years 2-4 years 4-6 years 6-12 years >12 years Within each age grouping, six functional categories are identified: Communication Feeding and Nutrition Musculoskeletal Mobility Cognition Sensory Impairment WORKSHEET The Quick Check Worksheet was designed to summarize the Critical Elements of Care using a check-off format to identify concerning trends over time. There is room for short notation regarding specific problems, treatment regimes or referral options. The worksheet may be used during each office visit to consolidate the information. Therefore, past and present concerns can be identified quickly, and intervention referrals initiated. In addition, there is a section for Family Issues. Each age grouping has been divided into functional categories. These are subdivided into a range of functional levels and coincide with specific recommendations for intervention possibilities. By reviewing the Critical Elements of Care specific to your patient s age group, you will be able to assess the areas of concern, identify the intervention possibilities and organize and simplify the child s care plan. Critical Elements of Care: Cerebral Palsy 10

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